Family launches walk for rare neurological disorder in hopes of raising awareness

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NORTH HAVEN--Hearing your child say their first words is a milestone for every parent. For a North Haven family, it took years for their child to speak because of apraxia, a neurological disorder.

David Fantarella Jr. couldn't say a word until he was 2 years old due to the disease, which affects one to two children per 1,000, mostly boys.

“It really is your brain not able to tell the muscles of your face how to enunciate and produce sounds," said David Fantarella, the boy's father.

Fantarella told FOX 61, “I felt like he was going to miss out on so much in life if i didn't figure it out.”

He’s spent countless days making trips around the country taking his son to speech language pathologists.

“When I say he didn't say anything, I mean 'goo goo, gaga,'--nothing. You could tell he knew exactly what I was talking about. He just couldn't communicate it." And specialists didn't seem to be helping. "We had a great young speech pathologist who made no progress in a year. By the time he was 3, he could say 'ma' and 'da,' that was it."

It was shortly after age 3 when significant progress started. Fantarella says the answer for them has been the right combination of therapists and early diagnosis. “Between the age of 2 and 4 is when their brain develops and you have to catch it by that age," Fantarella said of apraxia.

To raise awareness, Fantarella's sister, Jeralyn, has organized Greater New Haven's first walk for apraxia. She learned through a national organization, CASANA, that there are dozens every year. CASANA stands for “The Childhood Apraxia of Speech Association of North America.”

Jeralyn said, “There is a grandmother, a grandfather, a mother, a daughter out there viewing this story now and they're going to recognize things and perhaps their child is going to get the help David has received.”

If you want to help other families locally and nationally whose children are struggling with apraxia, the 1-mile walk is scheduled for Sunday, October 16, at Walnut Beach’s Devon Pavilion in Milford.

If you register before the event, the cost is $10 for kids and $20 for adults. Day-of registration is $12 for kids and $25 for adults. Registration is at 8 a.m. and the walk starts at 9 a.m.

Nick Fradiani Sr. will perform from 9 a.m. to noon. There will also be food, face painting, and pumpkin painting.